still here
Written Sept - Nov 2024 
I haven’t posted anything here since 2020. Partially because I thought I’d said everything I needed to; but more honestly, to wait until I could say I’m better now and this is what I’ve learned
Unfortunately, I’m incomprehensibly not.
“… ‘There is no greater agony than bearing an untold story inside you', wrote Angelou.
Silence is pain. But it is a pain with an exit route”
The Comfort Book (M, Haig, p. 35).
I’ve struggled a lot recently if recently can be considered several years. I’ve decided to lay some of it out, if not to capture how I’ve felt, then to release it.
Being sick has thrown my life into an unforgiving tailspin, one that’s been dark and soaked in challenges. I’ve disconnected from many things in my efforts to get better and ignore being unwell. Chronic illnesses can be incredibly isolating, physically, socially and mentally. I’ve become an audience member to so much of ‘normal’ life, everything that was once inherently easy.
Time is unrelenting and I’m always late. Life ploughs ahead without hesitation, it ushers you aboard constantly, but Time knows and cares not if your feet are stuck whilst the train departs every station. The world moves forward, change is inevitable, thundering across our lives, yet I remain utterly static.
I’ve shared snippets of my health recently, and a few people have stumbled across my stories or 2020 blog post and offered kind messages and/or questions. So here’s an overdue update, for anyone struggling, for curiosity's sake, for myself.
Below is largely an agglomeration of dark and bright moments over the last few years (ty notes app). Writing this has helped me get a better sense of myself, as despite not being able to move forward, in many ways what I’ve lost in momentum I’ve gained in breadth.
First of all however, I’ll share a brief overview of my situation 💛
In 2020 (following a slow start to investigations in NZ, partially as I thought it would all go away), I had two laparoscopies for endometriosis lesions (shout out to the Pouch of Douglas). Endo is a painful chronic inflammatory disease with no known cure, I was told it will likely mean surgical excision every few years as the growths return (which have even been found as far as the lungs, heart and eyes!) and 1/3 have infertility challenges. These surgeries greatly helped the intense left flank nerve pain I experienced but not my other symptoms. I was also diagnosed with post-infectious/viral Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), a complex multi-system disorder. A few colonoscopies and endoscopies identified gut lining inflammation, intestinal nerve damage, IBS and reactive gastropathy from the overseas infections. I experience(d) medical and travel PTSD, depression and anxiety from illness.
My day-to-day varies, but my baseline is low. Challenges change over time, but frequently centre around my weakened immune system, debilitating fatigue, diarrhoea, nausea, headaches, vertigo, stomach, sinus, throat and tonsil infections, chills, and fever.
I’ve had/have treatment and/or investigations for chronic sinusitis, tonsillitis, malabsorption, hEDS, IBS, parasites, MS, MCAS, viral chronic pharyngitis, pancreatic exocrine insufficiency, gut dysbiosis, bacterial overgrowth, leaky gut, and more, often minor, yet impactful issues that have sprouted in the past few years. I’m currently on the waitlist for specialist and still under investigation. I’ve already seen multiple and have had hundreds of stool and blood tests, CTs and MRIs due to an array of raised blood markers, infections and symptoms.
For the past 11 months I’ve been on an intensive protocol; consisting of 28 doses of medication & supplements daily, injections and IV immune support weekly (6X) then monthly, iron infusions, no sugars (not even honey 🥵), no carbs, no caffeine, no alcohol etc. (except for the odd ✨special occasion✨). The Dr hopes this will kill the bacterial overgrowth, heal my stomach and ultimately support my immune function and inflammatory illnesses. I’ve just had surgery for chronic infection of my tonsils (scarred and filled with ‘debris’), with the constant inflammation and bacteria retriggering stealth viruses and crashing the CFS/ME affecting the protocol’s success so far.
I’ve been on long-term meds, as well as a ridiculous amount of antibiotics and steroids for the relentless tide of infections. Much of my healthcare has felt band-aid, treating each infection as it arrived every few weeks, putting out fires but never knowing where the spark originated. I’ve had both brilliant and terrible medical experiences i.e. not being under for the commencement of a procedure, vein collapsing, failed IV and tube already going down my throat despite protests (Edit: this made walking into the operating theatre and up onto the table surrounded by 5 scrubbed professionals for my recent surgery mildly stressful).
At some point in the last few years, my body stopped feeling like I’d carried a foreign infection home and instead became foreign to me. Illness and medications took their toll, atrophied my muscles, stripped my hair, nails, independence and peace of mind. Vision weakened, brain fog descended, bones creaked and rashes bloomed. I stopped being able to absorb fats properly, couldn’t process alcohol and my blood showed mild malnutrition regardless of what I consumed. Medicines swelled my joints, my face, my hands, my weight. Problems compounded, illness folding again and again in on itself.
It’s hard to turn a downward cycle around, no matter how hard you pull the brakes. But I will keep trying to feel well, to heal, to carve out more life, even if it makes said life less comfortable right now.
Cortisol face (from medication, steroids/prednisone/LD Ami etc.)
I’ve committed to a plethora of medications, treatments and alternative therapies. I’ve physiotherapied, counselled, neuro-pain/brain re-wired, surgically excised, naturopathed, planned, yoga-d, breath-worked, meditated, ignored, supplemented, studied, read, painted, FODMAP, anti-inflammatory and KETO dieted, cried and laughed. And I got sicker.
I found clarity, growth, calm, ways to bear it all and carry on and then I did it again and again.
Time starts to feel cruel - telling you what it’s taken, memories never made, skills never grown, a whole different person that you could, should, be by now. It tells you it can take so much more, every day. I want my life, I want it more than I did 4 years ago.
I often feel let down and betrayed by ‘Something’.
I played by the rules, I did the work, swallowed the pills and the powders, did that procedure again, cut out my favourite foods again, meditated daily and tried that alternative cure, didn’t I?
I also didn’t give up, even when I said I would, even when I thought that was the last thing left.
Because it can be so exhausting, trying to heal. The new medicines, injections or supplements cause sleeplessness, anaphylaxis, brain fog, paranoia, projectile vomiting and diarrhoea (actually everything causes fucking headaches, nausea and diarrhoea). Your vein bruises or collapses from the IV, the positive thinking had me ignoring signs of illness, studying or exercising causes a CFS crash, and every single trip taken away (as a defiant act to prove I can live my life and be happy) results in a new infection, new hospital visits, new antibiotics, PTSD, often with months-long consequences and a fair dose of suffering.
It’s the suffering for me, I can’t suffer through more of it.
Pain and distress without a balm. Without assurances it’ll pass. Instead, knowing it’s likely right around the corner.
I feel so beat down, squished into this tiny space of existence and I can’t bear it.
To rub salt in the wound, the World seems to scream at me that internal struggles (that aren’t quickly resolved), are somehow, someway, self-inflicted. We crave explanation, cause and effect, desperately wishing to have control and if not control, then understanding. No one wants to believe terrible things can happen to them, inexplicably, at any point. Easier to believe it was, in part, their fault, preventable, treatable. They didn’t manifest a happy life, they didn’t deal with trauma right, they didn’t eat, move, think or sleep right. They aren’t like you. Bad genes maybe? Negative mindset? Weak? Drama queen? Just depressed? A lost cause? And if I blame myself, that it’s all my fault in some way, I would then, at least, have the power to change it.
The doubt, the disbelief, the confusion about chronic illness, about my own circumstances is a muted, yet chronic, humming. I can feel it even when it’s rarely said directly, instead with looks, tones, the media, politics and thoughtless comments. Why would anyone ever live this way, by choice?
My life objectively sucks. The small things I do can have consequences for days (sometimes weeks and months), and I’m supposed to pace every little thing, from laundry to teeth cleaning to avoid crashing (shoutout to any Spoonies). Being sick has been an atrocious career choice, which I was once (so recently) excited for. I can’t work or study full-time, I can’t plan for events, for the future, for a family, all I can do is keep trying to raise my baseline, to heal. To find ways to love myself despite feeling like an unproductive burden, depressing, useless and worthless.
I think people often won’t believe in something they haven’t experienced themselves, something they cannot overtly see. If I know anything, it’s to believe people know their own experience better than anyone else.
Chaos
I keep falling for the same fallacy; that if I do what I can, the universe will at least acknowledge my efforts, and some karmic entity will eventually respond.
To believe life’s all in our control is empowering, it makes it easier to attribute fairness to things, and it removes the insurmountable crushing fear that the world is often completely fucking random. That we can only control how we respond, how we perceive it, and how we embrace it. Change is a constant star, which may not terrify after all. If I’m honest, all I want is change. From the bottom of this pit, I’m hopeful that much of that change must inevitably be positive. (Touch wood: I hope I don’t get punished for writing that 😅).
Being at the mercy of inevitable change sounds disempowering. But we can react to the circumstances of our reality. The ability to respond, endless choices in what we do next. A constant tit-and-tat interaction between us and the great void. Steering our ship through thick black galaxies of possibility.
When our boats violently rock on troubling crests in the ocean of the universe, we get (limited, yet still present) choices in how to respond to changes in our path; push forward? Backwards? Stop? Change speed or course? Worry? Jump?
Sometimes our choices are far more limited; we’re tipped overboard, and the boat is gone. No matter how much you would choose a new vessel, it isn’t available to you. I cannot decide to be un-sick. I choose to try and heal, but I cannot manifest this from want alone, or perhaps at all myself.
However, I’m not drowning, I’m treading water, it’s mostly dark, lonely and uncomfortable. Sometimes it’s scary and bone-numbingly exhausting. Sometimes I consider letting myself drop beneath the surface, but I always come back up for air.
And sometimes I feel a current carry me, I rest, and the darkness feels again like a comforting blanket, a canvas of endless opportunity.
Still Here
I wrote in my first and only blog post “What if that one week that turned into seven months turns into me?”
Honestly, I think I wrote it like a dare. Like casting my worst fear out into the world would detach it from me. To write it down, to share it, was perhaps to conquer it.
It was unfathomable that this could happen. I was too busy and had far too many plans to have to give it all up, all at once. That I could survive that despair, leaving all my dreams and hopes heaped at the front door. That I could persevere, more months, let alone years with so many symptoms, so few answers, so little control over my fate.
Because pain has never been the most painful part of chronic illness, it’s the loss, the grief, the isolation. The unnerving time-warping power of the body, as even when some seconds pass with great discomfort, time has slipped through my grasp, quicker and quicker, as if the more it unbinds, the looser it becomes. And the faster it falls.
The two weeks, the seven months, the four years, did turn into me.
Unwell, stuck.
My worst fear, the one that sinks little spikes into my shoulders and slinks around my neck to breathe into my ear, is quiet.
I’m so afraid of it that I barely give it voice. And it knows it doesn’t have to say anything much anyway.
The thought surfaces from my consciousness as a greedy little shadow, the sort that pulls everything in to its orbit of nothingness. I bolt from the thought before it is given syllables. I distract myself with tasks I can manage, placing small goals and solutions in my path.
But without allowing myself to consider it, I know what the weight means on my shoulders. Heavy and silent, hopeless and empty. It looms, pressing, waiting. Fear manifests as quicksand, the more I squirm the more present it becomes. The greater hold it has.
Its shadow deepens, casting true terror. It’s only a question.
What if this is it?
Life isn’t fair for lots of people, what if it isn’t fair for you? Can you accept that?
How can you accept that?
To lose more than 4 years in the prime of my twenties has been devastating, life altering. I had such vivid dreams for life, so many that I couldn’t possibly live them all… But, not any? Not even the smallest sweetest little ones?
I’m so desperately afraid of treading a path so far from that bright light. To be a sad shell, an empty cavern of departed potential, dreams and love. Watching doors close in real time, frozen. The sickening panic as I watch Sylvia Plath’s fig tree rotting fruit to stem in front of me. Each future decaying, disappearing. Knowing how beautiful life could be, to be so close, to taste so much, for it to remain just out of reach.
And yet… I’m here, I’m still here.
Sometimes I want to shout it, to let people know it’s been really hard sometimes, that I wish I shared more of that, but I exist right now, on this earth with you.
I didn’t throw in the metaphorical towel, I did, however, wave it around, like a white flag.
I wanted to surrender a thousand times.
I’ve, in hollow moments, desperately wanted to concede. Came close, feebly tried.
But I’ve thrown nothing away.
I’ve been there, I’m sometimes still there, but right now, I’m here. I’m still here. I’m here.
I’m not faded or invisible or less.
I’m here, solid, made of matter.
My matter didn’t betray me like I said it did in my first blog post. My matter, my body, was always doing all it could.
I used to revere the idea of Mind Over Matter, but that’s only a way to divide myself, ignoring my body’s messages until I became too unwell. It was a way to stand against the current of dark rivers, and then rage against them when I was sick. I’ve tried so hard to be well, to be happy and whole and that’s what matters.
And... I’m wrong to say all my dreams have been clawed away from me, because I have lived dreams, I’ve loved and been loved, I’ve painted and laughed and seen sun-soaked days and the wondrous taste of a (really good) brownie after months of no sugar, I’ve felt horrible pain pass and sweet heavy sleep carry me, I’ve cried and danced, talked to strangers nothing like me and learnt so much I didn’t know existed to learn. I’ve felt gratitude, really, for the new ducklings by the park, the way my dogs yawn, and the begging pigeons at my window that don’t know how to hunt (don’t get me started on poor pigeons). I’ve seen so many beautiful things, lakes and mountains, fields and beaches. I’ve dipped in every body of water I can. Maybe all these tiny wishes add up to the weight of those big ones? I can’t be certain I’ll reach my other dreams, but how beautiful is it to have dreamed in the first place, to know nothing is for certain, except that we’re alive right now.
What I want to say, to myself, to anyone there, is that woven between all its shadows, life is bursting with simple wonder, and sometimes even more so when you’re at a loss. If I hadn’t been completely knocked down, I’m not sure I ever would have stopped to listen to my own body and to the world around me. I was often so engrossed in the last thing or next thing. Being stuck by illness has, at least, cemented me to the present.
And, it’s so easy to ignore what’s a given, but I’m not sure anything in life that is given can promise to stay. It’s always the tiniest most inherent parts of our worlds that are so sorely missed when lost. These small things amass to the experience of our lives.
The freedom to eat unfettered is not a given (for so many reasons). The choice to eat what we like most days is phenomenal. What a weird thing to know, only when it’s missed. If/when it becomes more available, will I no longer feel the same? Will I covet the next most missed thing? The bigger things that are withheld from me.
Maybe all loss and suffering can be is a lesson to acknowledge pain and acknowledge what joy remains.
Because so much remains for me.
I can enjoy the full stretch of my limbs, the heavy pull when slipping to sleep. Revel in the safety of a loved one’s arms, dry sheets on clean skin in a quiet room. How it feels as soles slip against the slick of a trampoline, padding against cool tiles on a hot day, finding purchase against the rough bark of a tree, balancing on shifting pebbles in a lake. Toes digging into plush carpet, the grass, the sand. I can know the crickets at dusk, the tūī at dawn, cicadas in the summer, meet mornings both wet and cold and crystal bright. Witness the turn of the earth, feel the kiss and scratch of rain and sun. The smell of Mānuka, coffee, and smoke. Hot showers and goosebumps. Music, a good book, rain and candles. I can let the wind greet my cheeks like it’s missed me. Let my skin redden, ears sting, eyes salt.
I can stop my soul from paling in the shadows of my biggest expectations and colour it with the abundance of life’s tiny wonders.
People have said that I'll come out the other side, and when I do, I’ll be better off, stronger. Pressure making diamonds, post-traumatic growth and the like. I'll walk through the depth of a valley, to finally summit, a glorious sunrise crawling upwards to meet me. Like there's nobility to illness when persevered (and overcome). That then you’re brave and strong, for being so scared and weak, for simply surviving.
I’m not sure I’m strong, I think hardship has softened me, like rock to sand, ground down over time.
But I don’t know that being milled has made me any less than I was before. Rather than bouldering forcefully down one path, I want to sift painlessly through life, with life, swimming downstream and letting things fall as they will.
To experience peace not from being the master of fate, but mastering how the dust settles.
If anyone has felt/feels the same, suffering against something that feels insurmountable, so out of your control, please know that life is simultaneously beautiful and terrible. Know pain may exist in this moment, but there will be other moments. And maybe you’ll notice the absence of pain or distress, as peace. That suffering is softer when you don’t beat yourself up for the uncontrollable, the past, the future or the unknown. Know that your body, your soul, that life, wants you to be well, to thrive and be happy, even if parts can’t. Life may look different to how you expected, but it exists right now for us, we’re here and that’s so amazing. There’s so much to live for, especially when you let yourself flow downstream. Please know I believe you, that it’s been really awful and scary, and I’m so sorry (and know I’m always open if you need to reach out 💛).
art/photos are my own* & thankyou to anyone who has shared their love, support or own xp at any point in the last few years it means everything 💛💛💛*